UC to J-Pouch Story

Posts Tagged ‘constipation’

Best Case Scenario

Posted by Megan on July 18, 2008

Here is some food for thought for those heading in to or pondering “elective surgery.” Instead of pondering and dwelling on what are all the possible complications of surgery, why not consider what is the BEST CASE SCENARIO?  Why do we always see the “worst case scenario” and why was it a revelation to me that seeing life from what is the BEST CASE SCENARIO would really make a lot less anguish in life.

My Mom is having surgery on her eye for glaucoma, and she is currently in a state of fear. All she can say is “what if the surgery goes wrong and I lose sight in my eye?”  A rightful fear, for sure – however, I never hear her say, “80% of this surgery works and removes the pressure from the eye and can solve the problem.”  Right now she is so involved with fear that she can not see BEST CASE SCENARIO, she will only see worst case scenario.

I just know that when we were coping with Mark going into to surgery we spent so much energy (as in years) dwelling on what could go wrong, and almost refusing to see what could go right.  As you know, his outcome has been all the scenario of “what could go right” so we wasted spent so much energy worrying about what could go wrong.   Of course, I know in retrospect so much easier now to say to you “See best case scenario”but seriously, don’t forget to see your “best case scenario options“.

Awareness of impermanence is encouraged, so that when it is coupled with our appreciation of the enormous potential of our human existence, it will give us a sense of urgency that I must use every precious moment” – The 14th Dalai Lama

 

Photo via: Fanboy30

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A picture speaks 1,001 words

Posted by mark on July 14, 2008

Below is a photo of Mandy and her friend simply having fun and NOT letting her ostomy get in the way of water skiing and living life. 

“haha all taped up and ready to go!  my friends taped my bag to my stomach so it wouldn’t fly around…and my friend Kevin taped his stomach so I wouldn’t be embarrassed lol”

A picture speaks a 1,001 words

A picture speaks a 1,001 words

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Tony Snow: Dies at 53 yrs

Posted by Megan on July 12, 2008

July 12, 2008:  Tony Snow has died from colon cancer, he was 53 years old.  Tony Snow served as White House Press Secretary for Bush, and other republican political ties. This post isn’t about politics, but the politics of IBD rather. This post is about the fact that he UC for 25 years.  After living with UC for 25 years, he found he had colon cancer, eventually the cancer spread to the liver which ended his battle.  In 2005 he had his colon removed from cancer, and in 2007 was back in care for an abdominal growth. 

Click here:  Tony Snow on CNN

Click here:  Tony Snow on Wiki

Click here: Tony Snow on www.jpouch.org Forum Discussion

 

About the risks of UC/CD becoming Cancer:  Since I am not a medical professional on this topic, I’ll only provide you with the links to proper sites so you can get accurate information.  Click here for the  CCFA Update on Colorectal Cancer: Knowledge is Prevention .  This is a webcast, article and brochure about the topic, and discusses what are the risks of colon cancer and IBD, etc…

PDF Brochure Click Here:  Bringing to Light the Risk of Colon Cancer for Crohn’s and Colits Patients

Excerpt from Brochure page 2: 

 

 

 

“Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), are chronic diseases that inflame the digestive or gastrointestinal (GI) system. Specifically, ulcerative colitis inflames and causes sores in the colon, while Crohn’s disease can inflame any part of the GI tract, including (in some cases) the colon. If you have had inflammation of the colon, you are at a higher risk for developing CRC than the general population (unless your inflammation is limited to the very bottom of the rectum). If your Crohn’s is limited to the small intestine, you are at a slightly increased risk for cancer in the areas that were inflamed. Even if your disease is in remission, you remain at risk.

The two factors that are associated with increased cancer risk are disease duration and the extent of the colon involved. The risk for CRC doesn’t start increasing until eight to 10 years after you develop Crohn’s disease or ulcerative colitis. People whose entire colon is involved have the greatest risk, and those with inflammation of the rectum only have the least risk.”

Please cllick here to keep reading and gaining accurate information about the risks:  Bringing to Light the Risk of Colon Cancer for Crohn’s and Colits Patients 

 

 

 

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CCFA Billboard

Posted by mark on July 11, 2008

CCFA Billboard, Tucson Arizona USA

 Looks like “times they are a’ chaning” if CCFA is posting billboards to bring disease awareness.  Hopefully you’ll be able to see the billboard details, but the female in the photo is sitting on the toilet and resting her head against the wall with her eyes closed.  It’s a pretty powerful image.  The text reads “Crohn’s disease and ulcerative colitis can be overwhelming.  We can help!” 

My sister told me about this billboard, and I told her she had to photograph it for us to share with others. This is so great because not so much for those living with the disease but so that others affected by those with disease can see that it really is a problem!  The billboard is up in the city limits Tucson, Arizona USA (greatest city in the world).  Thanks Erica for the great photo!

If any of you have great photos that are about IBD awareness you should send them and we’ll share them with our readers!

Photo by: Erica (Megan’s Sister)

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Carter’s Surgery Photos

Posted by mark on July 7, 2008

WELCOME CARTER to the UC to J-POUCH BLOG – NEW BLOGGER INTRODUCTIONS!
Carter S. (22 years old) has been generous enough to share his story and surgery photos with our UC to Jpouch Story readers. 
Here is the link to his story and more photos   Surgery Photos and Story: Carter S.    
Be sure to send him comments and welcome him both the blog and his new life with a J-Pouch.  He tells an incredible story (he’s a great writer as well 🙂  We are so happy to have Carter sharing his story with us and with ya’ll.

 

Carter.S with shirt over ileostomy bag

Carter.S with shirt over ileostomy bag

Here is the link to his story and more photos   Surgery Photos and Story: Carter S.    
 

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1 Year Anniversary NO UC!

Posted by mark on July 6, 2008

THREE CHEERS TO RENEWED HEALTH!

Every event, every situation in which you may find yourself has a positive value, even the dramas, even the tragedies, even the thunderbolt from a calm sky.” – Arnud Desjardins

 

I have my step 1 one year anniversary today, July 6th, 2007. And feeling incredibly well, with low BMs and overall feeling of good health. I am so thankful for chance to be healhty again, and thankful for all the great resources avaialable to get through this. I don’t need to tell you on this board how much of life was hindered due to UC, and how much time I lost deciding for surgery, etc…

And to celebrate this 1 year anniversary from Step 1 surgery, you should click below and watch the videos by Jordan Sweeney. He is living with UC and has made an excellent album with videos about his reality. Watch this first video Rain Song, and it will hit you to the bone -Megan saw it for the first time and tears came flowing, when living with the disease I don’t think always realized what it was taking away from us.

Thanks to everyone who helped us through these past few years!
Mark (1 year healthy living with No COLON and No UC)

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Communicating about UC

Posted by mark on July 6, 2008

   WEBCAST: No One Understands My Pain: Communicating about Crohn‘s & Colitis

Health Take has offered a very good webcast on how to talk to others about the disease you are living with.  The webcast especially addresses how with these diseases we often look “fine or healthy” but we are not.

“Often when you’re suffering from painful Crohn’s disease or colitis symptoms, you may look healthy and others may assume you feel better than you do. So how do you ask for the support, understanding and help that you need?

Join us as our expert guests share tips for effectively communicating about your Crohn’s disease and colitis pain and other symptoms with your family, friends and others in your life. From informing a co-worker about a difficult symptom to expressing your needs to a spouse or new love interest, you will learn about techniques that will help you feel supported and empowered. Plus, you’ll learn why it’s important for your emotional health that you speak up and seek assistance.”

Communicating with family, especially my family was EXTREMELY difficult. They just didn’t, couldn’t understand chronic illness and what it really meant.  When you have UC  “are you feeling better today” has a whole new meaning.  We wrote our story of support and have put it on here for Our Story of Support.  Part of this blog has been to help others communicate their situation better. 

BLOG POST FROM LOTTIE in the U.K., she is headed into surgery at the end of the month and on her blog (which you should check out http://lottie30.wordpress.com/) she wrote the following post that made us think more about “communication”

“Talking to Megan and Mark about support etc and reading their take on it, made me realise that very often unless you ask you don’t get.  With this in mind I took an unprecedented decision to speak to them about it properly.  It is impossible to get my brothers and sisters in one place at once, especially as one lives in Sydney, so I emailed them all (and their partners/husbands).  I explained that I was having the op, what it entailed and more importantly how I felt about it.  I explained that it was a scary time for me and N and the kids and that we need their support not their sarcasm or dismissiveness (which is what I would normally get).  In response I have had some of the most lovely messages I have ever had from my brothers and sisters, which have made me feel loved and cared for by them like I never have before.  It is really special.  It has made me realise that yes, you definitely have to tell people what you want and then you might get it.  I feel supported in a way I never have before and that is an amazing feeling.”

Photo by: Jake Shears

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Sex and Intimacy

Posted by Megan on July 3, 2008

Sex and Intimacy, Guide for Men and the people who love them Webcast

Oh, the tricky part of chronic disease. And the part we don’t nearly talk about enough, sex and intimacy.  I found the above webcast from male living with Crohn’s to be a honest, humorous discussion about his body image, disease, and his sex and intimacy challenges. Here, see this link to Mout Sinai about Sexuality: possible problems after surgery .  Although it is excellent information, it is “technical” where is the emotional stuff, where is the relationship aspect. Under the Emotional Issues section of the Mt. Sinai page they do state “Of course, other factors also contribute to how an individual perceives changes after surgery. People whose self-image is more reliant on physical appearance may be more prone to concern. Having or not having a committed partner has an important effect on coping. The amount of education available for surgery, which may allow for more realistic expectations, may also have an influence.”   Okay, so let’s talk about that, what do they mean?

I know that this was for years a real struggle for Mark and I to manage, especially when we were learning his disease, and he was losing his interest in anything physcial the more his health deteriorated.  But what we did form was a true relationship based on intimacy.  And it has been this intimacy that was one of the biggest gifts UC and surgery gave us.  We learned because we had to what gentleness and patience means, if we hadn’t I don’t think our relationship could have made it.  I find now that our intimacy is on a level unlike what I see in many couples (non-disease couples), and to be honest I wouldn’t trade it for anything.  We’ve been together 14 years, in our early 30s, and although many years of 20s were lost to UC – we are now back to healthy living which means more sex with now this added intimacy.   Good things can come from being sick I guess?!

I think that when we address disease or surgeries like Mark’s we talk about everything but the reality of body image, sex and intimacy. I wanted to share some of our experience because IT IS REAL, and all you reading this are probably in some stage of dealing with either sex or intimacy issues due to your stage of disease or surgery.   All I can say is talk about it, be honest and know it was one of our hardest issues over Mark’s illness.

Sex and living with an Ostomy:  Everryone is different, so for some people being intimate with the stoma is probably a bigger than others (early on when the stoma is newish).  For us it wasn’t a big deal at all, and the reason it wasn’t a big deal is because Mark was HEALTHY finally. So for us the ostomy represented health.  I think the first time we were intimate after the stoma Mark wore the phoenix belt, then after that it wasn’t a big deal, he would just empty the bag and it would just there. I know some people tape up the bag, I know some people use attach smaller more temporary ostomy bags (which is clever). I’ve read of women wearing lingerie that strategically covers up the bag, etc…People make it work, and you’ll be suprised by how it is not really a big deal (as long as you make it a non-issue). 

The Female Perspective: Females on Jpouch.org talking about Ostomy & Sex

The Male Perspective: Males on jpouch.org talking about sex and ostomy

Link to many many pages of topics relating to sex & jpouch/ostomy stuff:  Used the “Find” feature typed in “Sex” and there are 13+ Pages related to sex on the jpouch.org forum

These are only a few perspectives, but you can see that (1) people make the ostomy work and it isn’t an issue, and (2) there are places like www.jpouch.org where you can go and get the support you need on any related issues – you are not alone in this process.

 

Photo via: Dr.John2005

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Songs about UC

Posted by mark on June 30, 2008

There are no words to describe how awesome this is, Jordan Sweeney has taken his talent for music and written an album about living and battling UC. You must listen to his songs, and buy his album to support great work on bringing awareness to UC. His website is located here: Jordansweeney.com

The Rain Song

Sleep now, you’re on the edge of breaking down.
Breathe now, you can’t forget that one.
Rain fell, and you’re still along that same wet road.
Oh I’m only twenty one and I’m already so low.

When I’m in no pain, I’m so alive.
I hate my face when I take my pills.
I’ll live this way and I will until I’m gone.

But I’m okay. The topics change. I’ll be so great. I’m on my way.

It feels like rain when ever I flare.
On cloudy days I become aware.
Rain comes and goes, but when it comes, it likes to rot.

music and lyrics by jordan sweeney

 

 

In The Dark

I’m in the dark. I’m freezing.
The ghost is in my skin.
I’m paranoid, I’m fleeting. The stars are my light.
It’s dim, and I need more light.
Can I breathe tonight?

Is this me, my life?
Is there a reason for pain all night?
Will I be alright?

I’m in the boring season. It seems like no one’s here.
But all around is reason to live.
It’s only fear that pulls the trigger.
Will this last forever?

It’s time to see inside.
Is there medication that’s right?
Will I be alright?

I don’t want this. Please take this back.
God, I’m so scared. It’s time to relax.
Twenty seconds left for this time.
Will the next one hurt more? I’m fine. Why not?

music and lyrics by jordan sweeney

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Potential Problems After Surgery

Posted by mark on June 29, 2008

Many people are concerned about the longevity of their jpouch. How long will it last?  What types of complications might potentially occur?  Here is a link to an excellent site that gives you really good in-depth and objective info on the Potential Problems Following J-Pouch Surgery

Image to the left shows the large intestine and rectum removed, the formation of the temporary ileostomy, and the jpouch.  The whole series of photos can be found by clicking on the following jpouch.org link.

Image via:  Jpouch.org

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